posting from "newly diagnosed" forum

[coltsfan715]

posting from "newly diagnosed

Yes the mucus alone can be doing harm to his lungs. He may seem healthy but if it is untreated and he is culturing some type of bacteria - I am thinking Psuedomonas then there is the likelihood that there is being some damage done to his lungs.

I would maybe ask the doctor if there is something he could prescribe to help with his breathing until you are able to get the test done and get the results. If he truly thinks your son had CF and he thinks that the meds may help him there is no real reason he can't give you something to help now. There are many people that get meds that seem to be used more commonly for CF patients before they get a confirmed diagnosis.

Bottom line it is great that they are getting him tested, but it is not necessary for him to have difficulty breathing for 2 months or more while you wait for the testing and the results.

As for your concerns about your health. It is possible you have a polyp yes - I personally have a polyp but do not have major issues with nasal blockage on most days. I also have a deviated septum and that tends to cause me more breathing difficulties than the polyp I have. Basically I am saying that polyps are possible but there may be something else too - like a deviated septum that is causing the breathing difficulty in the one nostril. If you are overly concerned about it I would ask for yourself to be tested once you get your sons results back or maybe talk to your doc about the nasal issues. If they see a polyp then you have your answer to the polyp question - but again it may be something else.

Hope things move along quickly and things get better for your little one soon.

Take Care,
Lindsey

 

[coltsfan715]

posting from "newly diagnosed

Yes the mucus alone can be doing harm to his lungs. He may seem healthy but if it is untreated and he is culturing some type of bacteria - I am thinking Psuedomonas then there is the likelihood that there is being some damage done to his lungs.

I would maybe ask the doctor if there is something he could prescribe to help with his breathing until you are able to get the test done and get the results. If he truly thinks your son had CF and he thinks that the meds may help him there is no real reason he can't give you something to help now. There are many people that get meds that seem to be used more commonly for CF patients before they get a confirmed diagnosis.

Bottom line it is great that they are getting him tested, but it is not necessary for him to have difficulty breathing for 2 months or more while you wait for the testing and the results.

As for your concerns about your health. It is possible you have a polyp yes - I personally have a polyp but do not have major issues with nasal blockage on most days. I also have a deviated septum and that tends to cause me more breathing difficulties than the polyp I have. Basically I am saying that polyps are possible but there may be something else too - like a deviated septum that is causing the breathing difficulty in the one nostril. If you are overly concerned about it I would ask for yourself to be tested once you get your sons results back or maybe talk to your doc about the nasal issues. If they see a polyp then you have your answer to the polyp question - but again it may be something else.

Hope things move along quickly and things get better for your little one soon.

Take Care,
Lindsey

 

[JRPandTJP]

posting from "newly diagnosed

Just wondered if your son eats formula or breast milk? Have you considered a dariy or food allergy in addition to the CF? My son has both and you may want to look into it. If you are breastfeeding you can eliminate it from your diet (it take about 2 weeks - 28 days to get all the dairy proteins out of your system but you can see immediate responses often times). It you are feeding formula you may want to consider switching to one without dairy proteins or a predigested formula to see what happens.

Are you feeding cereals yet? Grains can also be a source of allergy in young babies. Rice cereal are typically safer but wheat and corn can be propblematic for food sensativity.

Is there molds in the house? These can be very highly allergic as well. Just some other things to consider while you are waiting for diagnosis.

I also agree to push for a genetic test as others have mentioned. Also have them check his vitamin and protein levels. You have to push and your have to demand sometimes...do not ever apologize.

This is a very stressful time and please know you are in our thoughts ;-)

Jody

 

[JRPandTJP]

posting from "newly diagnosed

Just wondered if your son eats formula or breast milk? Have you considered a dariy or food allergy in addition to the CF? My son has both and you may want to look into it. If you are breastfeeding you can eliminate it from your diet (it take about 2 weeks - 28 days to get all the dairy proteins out of your system but you can see immediate responses often times). It you are feeding formula you may want to consider switching to one without dairy proteins or a predigested formula to see what happens.

Are you feeding cereals yet? Grains can also be a source of allergy in young babies. Rice cereal are typically safer but wheat and corn can be propblematic for food sensativity.

Is there molds in the house? These can be very highly allergic as well. Just some other things to consider while you are waiting for diagnosis.

I also agree to push for a genetic test as others have mentioned. Also have them check his vitamin and protein levels. You have to push and your have to demand sometimes...do not ever apologize.

This is a very stressful time and please know you are in our thoughts ;-)

Jody

 

[JRPandTJP]

posting from "newly diagnosed

Just wondered if your son eats formula or breast milk? Have you considered a dariy or food allergy in addition to the CF? My son has both and you may want to look into it. If you are breastfeeding you can eliminate it from your diet (it take about 2 weeks - 28 days to get all the dairy proteins out of your system but you can see immediate responses often times). It you are feeding formula you may want to consider switching to one without dairy proteins or a predigested formula to see what happens.

Are you feeding cereals yet? Grains can also be a source of allergy in young babies. Rice cereal are typically safer but wheat and corn can be propblematic for food sensativity.

Is there molds in the house? These can be very highly allergic as well. Just some other things to consider while you are waiting for diagnosis.

I also agree to push for a genetic test as others have mentioned. Also have them check his vitamin and protein levels. You have to push and your have to demand sometimes...do not ever apologize.

This is a very stressful time and please know you are in our thoughts ;-)

Jody

 

[boo]

posting from "newly diagnosed

Thank you all so much for your replies.<br>
<br>
I have also wondered about a milk allergy (not eating anything else
at present) but he doesn't have any vomiting or diarrhea. Could a
milk allergy cause the gurgling? The gurgling sound seems to come
from way down in his chest and it can be really loud at times. But
he almost never coughs. Maybe once a day, if that.<br>
<br>
I also noticed that his cot bumper (yellow) had a big stain on it
last night from where he was sweating. As the stain dried, the
outer edge was completely white, which suggested to me that it
might be quite salty.  Does sweat normal do that? I have given
up on licking his poor head because my sense of what is salty and
what is not has gone completely crazy.     

 

[boo]

posting from "newly diagnosed

Thank you all so much for your replies.<br>
<br>
I have also wondered about a milk allergy (not eating anything else
at present) but he doesn't have any vomiting or diarrhea. Could a
milk allergy cause the gurgling? The gurgling sound seems to come
from way down in his chest and it can be really loud at times. But
he almost never coughs. Maybe once a day, if that.<br>
<br>
I also noticed that his cot bumper (yellow) had a big stain on it
last night from where he was sweating. As the stain dried, the
outer edge was completely white, which suggested to me that it
might be quite salty.  Does sweat normal do that? I have given
up on licking his poor head because my sense of what is salty and
what is not has gone completely crazy.     

 

[boo]

posting from "newly diagnosed

Thank you all so much for your replies.<br>
<br>
I have also wondered about a milk allergy (not eating anything else
at present) but he doesn't have any vomiting or diarrhea. Could a
milk allergy cause the gurgling? The gurgling sound seems to come
from way down in his chest and it can be really loud at times. But
he almost never coughs. Maybe once a day, if that.<br>
<br>
I also noticed that his cot bumper (yellow) had a big stain on it
last night from where he was sweating. As the stain dried, the
outer edge was completely white, which suggested to me that it
might be quite salty.  Does sweat normal do that? I have given
up on licking his poor head because my sense of what is salty and
what is not has gone completely crazy.     

 

[ktsmom]

posting from "newly diagnosed

Sending long-distance hugs your way. I know what you mean about being totally consumed by this.

You have done very well to get as far as you have; I would just echo everyone else saying there is no reason to wait two months to get some relief for your little one. Keep at it - you are doing the right things!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

posting from "newly diagnosed

Sending long-distance hugs your way. I know what you mean about being totally consumed by this.

You have done very well to get as far as you have; I would just echo everyone else saying there is no reason to wait two months to get some relief for your little one. Keep at it - you are doing the right things!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

posting from "newly diagnosed

Sending long-distance hugs your way. I know what you mean about being totally consumed by this.

You have done very well to get as far as you have; I would just echo everyone else saying there is no reason to wait two months to get some relief for your little one. Keep at it - you are doing the right things!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[sdelorenzo]

posting from "newly diagnosed

Boo,
Waiting two months to get tested really is too long to wait, especially with his respiratory problems. You need to find the closest CF center to you. Then CALL them repeatedly and explain your situation to anyone that will listen. Hopefully, you will get a hold of a nurse or someone who can get your sweet boy in to get some testing done including a throat swab to see if he is culturing a bacteria that needs to be treated ASAP. Also, about 80% of those who are diagnosed with cf do not have a family history of cf. When my boy was a baby he also slept with his head thrown back. Not sure why he did that. Hope you find some answers soon.
Sharon, mom of Sophia 5 and Jack, 3 both with cf

 

[sdelorenzo]

posting from "newly diagnosed

Boo,
Waiting two months to get tested really is too long to wait, especially with his respiratory problems. You need to find the closest CF center to you. Then CALL them repeatedly and explain your situation to anyone that will listen. Hopefully, you will get a hold of a nurse or someone who can get your sweet boy in to get some testing done including a throat swab to see if he is culturing a bacteria that needs to be treated ASAP. Also, about 80% of those who are diagnosed with cf do not have a family history of cf. When my boy was a baby he also slept with his head thrown back. Not sure why he did that. Hope you find some answers soon.
Sharon, mom of Sophia 5 and Jack, 3 both with cf

 

[sdelorenzo]

posting from "newly diagnosed

Boo,
Waiting two months to get tested really is too long to wait, especially with his respiratory problems. You need to find the closest CF center to you. Then CALL them repeatedly and explain your situation to anyone that will listen. Hopefully, you will get a hold of a nurse or someone who can get your sweet boy in to get some testing done including a throat swab to see if he is culturing a bacteria that needs to be treated ASAP. Also, about 80% of those who are diagnosed with cf do not have a family history of cf. When my boy was a baby he also slept with his head thrown back. Not sure why he did that. Hope you find some answers soon.
Sharon, mom of Sophia 5 and Jack, 3 both with cf

 

[JRPandTJP]

posting from "newly diagnosed

I would agree with Sharon on not waiting 2 months. THis is unacceptable and your doctor may not be aware of the dangers of complications going up the longer you wait. They need to get him in ASAP and have the genetic test done now (simple blood draw...Guthrey panel is a heel stick similar to how they do the PKU at birth). Ask Ambrey (see top of this forum) how to get a test ASAP as well. A sputum culture is important at this point as well with the lung symptoms you discribe.

I don't want to alarm you but waiting is putting your son at risk for potenitial vitamin deficiencies (ADEK), protein and fat malabsorption (often malabsorption due to pancreatic insuffuciency happens slowly over time and suddenly there is a major problem), dehydration, and lung infections/damage. You really have to relay this to your doctor or go see a pulmonogist at a hospital if they won't listen.

Have they looked into reflux...throwing head back and gurgling can be related to reflux (does he keep his feedings down?) This is also a common problem in CF.

Please push for an immediate sweat test and DNA test...you will have your answer in 2 weeks time typicallY (at least in the US). Sweat test is sooner than that.

Hang in there,

Jody

 

[JRPandTJP]

posting from "newly diagnosed

I would agree with Sharon on not waiting 2 months. THis is unacceptable and your doctor may not be aware of the dangers of complications going up the longer you wait. They need to get him in ASAP and have the genetic test done now (simple blood draw...Guthrey panel is a heel stick similar to how they do the PKU at birth). Ask Ambrey (see top of this forum) how to get a test ASAP as well. A sputum culture is important at this point as well with the lung symptoms you discribe.

I don't want to alarm you but waiting is putting your son at risk for potenitial vitamin deficiencies (ADEK), protein and fat malabsorption (often malabsorption due to pancreatic insuffuciency happens slowly over time and suddenly there is a major problem), dehydration, and lung infections/damage. You really have to relay this to your doctor or go see a pulmonogist at a hospital if they won't listen.

Have they looked into reflux...throwing head back and gurgling can be related to reflux (does he keep his feedings down?) This is also a common problem in CF.

Please push for an immediate sweat test and DNA test...you will have your answer in 2 weeks time typicallY (at least in the US). Sweat test is sooner than that.

Hang in there,

Jody

 

[JRPandTJP]

posting from "newly diagnosed

I would agree with Sharon on not waiting 2 months. THis is unacceptable and your doctor may not be aware of the dangers of complications going up the longer you wait. They need to get him in ASAP and have the genetic test done now (simple blood draw...Guthrey panel is a heel stick similar to how they do the PKU at birth). Ask Ambrey (see top of this forum) how to get a test ASAP as well. A sputum culture is important at this point as well with the lung symptoms you discribe.

I don't want to alarm you but waiting is putting your son at risk for potenitial vitamin deficiencies (ADEK), protein and fat malabsorption (often malabsorption due to pancreatic insuffuciency happens slowly over time and suddenly there is a major problem), dehydration, and lung infections/damage. You really have to relay this to your doctor or go see a pulmonogist at a hospital if they won't listen.

Have they looked into reflux...throwing head back and gurgling can be related to reflux (does he keep his feedings down?) This is also a common problem in CF.

Please push for an immediate sweat test and DNA test...you will have your answer in 2 weeks time typicallY (at least in the US). Sweat test is sooner than that.

Hang in there,

Jody

 

[bmombtoo]

posting from "newly diagnosed

Boo,<br>
I agree with all the others. Two months is to months to long to get
some relief or answers. Relief would be great. When My Josh was a
bay he breathed really weird when he was asleep.....so weird that I
would let the pediatrician listen to him over the phone. It wasn't
really wheezing but a real noisy almost snoring sound. We started
using the nebulizer and clean air machines. In all he had 3
hospitalizations for high fevers and breathing problems. Here we
are now at age 12 and he has just been diagnosed with CF<br>
<br>
I too have a family member who dies in his early twenties. My Mom
;lost two brothers, one to CF and one supposedly to cancer. She was
born in 1925 and they were several years older than she. Our CF
doctor believes that a lot of these deaths years ago could have
been CF related. By the way we are African American so no one even
considered CF for our race until the last decade or so. Also I have
always had lung problems and I will be taking the nasal
differential potential test for CF as my sweat chloride was
negative (so was Josh's). His nasal differential was positive and
nasal polyps are a almost always sign of CF in children.<br>
<br>
Best of luck and you can never ask too many questions.

 

[bmombtoo]

posting from "newly diagnosed

Boo,<br>
I agree with all the others. Two months is to months to long to get
some relief or answers. Relief would be great. When My Josh was a
bay he breathed really weird when he was asleep.....so weird that I
would let the pediatrician listen to him over the phone. It wasn't
really wheezing but a real noisy almost snoring sound. We started
using the nebulizer and clean air machines. In all he had 3
hospitalizations for high fevers and breathing problems. Here we
are now at age 12 and he has just been diagnosed with CF<br>
<br>
I too have a family member who dies in his early twenties. My Mom
;lost two brothers, one to CF and one supposedly to cancer. She was
born in 1925 and they were several years older than she. Our CF
doctor believes that a lot of these deaths years ago could have
been CF related. By the way we are African American so no one even
considered CF for our race until the last decade or so. Also I have
always had lung problems and I will be taking the nasal
differential potential test for CF as my sweat chloride was
negative (so was Josh's). His nasal differential was positive and
nasal polyps are a almost always sign of CF in children.<br>
<br>
Best of luck and you can never ask too many questions.

 

[bmombtoo]

posting from "newly diagnosed

Boo,<br>
I agree with all the others. Two months is to months to long to get
some relief or answers. Relief would be great. When My Josh was a
bay he breathed really weird when he was asleep.....so weird that I
would let the pediatrician listen to him over the phone. It wasn't
really wheezing but a real noisy almost snoring sound. We started
using the nebulizer and clean air machines. In all he had 3
hospitalizations for high fevers and breathing problems. Here we
are now at age 12 and he has just been diagnosed with CF<br>
<br>
I too have a family member who dies in his early twenties. My Mom
;lost two brothers, one to CF and one supposedly to cancer. She was
born in 1925 and they were several years older than she. Our CF
doctor believes that a lot of these deaths years ago could have
been CF related. By the way we are African American so no one even
considered CF for our race until the last decade or so. Also I have
always had lung problems and I will be taking the nasal
differential potential test for CF as my sweat chloride was
negative (so was Josh's). His nasal differential was positive and
nasal polyps are a almost always sign of CF in children.<br>
<br>
Best of luck and you can never ask too many questions.